Wednesday, March 31, 2010

Sometimes it's easy for me to forget that Jesus loves Emily more than I do.

Especially when things are hard and bad things are happening to her that I don't understand or can't explain. When those things happen it's easy for me to lose focus and think of the issue/issues at hand. And that is where the mistake is made.

When I focus on what is happening to Emily I only see what is happening in that moment and I don't see the big picture. God does.

God sees the bigger picture and God knows the end and the outcome of Emily's battle with Infantile Spasms. He also loves Emily with a love that I will never fully know or understand this side of Heaven.

You must remember that. When you see your child suffering and you can't explain why they are going through what they are going through you have to remember how much God loves them. The love you have for your child is NOTHING compared to how much God loves them!!

That is how you know what you are going through will be okay in the end. That is how you know that God is in control and His wisdom and love is beyond anything we could ever know or understand.

Sunday, March 21, 2010

So how in the world does a person get through all this when all they want to do sometimes is throw in the towel?

PERSISTENCE!

I've found that being persistent is key. It's not easy but if you stay persistent things tend to work themselves out.

A great example of persistence is found in the Bible when Jesus is trying to teach the disciples the importance of always praying and not giving up. Needless to say, it's been my "go to" scripture here lately.

1 Then Jesus told his disciples a parable to show them that they should always pray and not give up. 2 He said: "In a certain town there was a judge who neither feared God nor cared about men. 3 And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'

4 "For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, 5 yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "

6 And the Lord said, "Listen to what the unjust judge says. 7 And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? 8 I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?"

What a great example of what persistence looks like! So much so, that Jesus uses this story to teach the disciples a lesson.

But maybe we should also pay attention to the last sentence in that scripture.

It says...

However, when the Son of Man comes, will he find faith on the earth?

I think that also is a lesson in itself. That we should have more faith than what we sometimes have. The amount of faith it takes to remain persistent and always pray for something or someone we so strongly care about.

I believe with all my heart Jesus knew how easy it would be for the disciples to get discouraged and want to give up when He would eventually leave them. What a great example he used to teach them a valuable lesson in being persistent and remaining faithful.

It's something I believe can help you keep going when you feel like giving up.

Friday, March 19, 2010

So we go home from a 9 day stay in the hospital only to show right back up 24 hours later.

Frustration Hunts Me Down.

Emily was doing great when we went home. We thought her ketogenic diet was working well and we actually got our hopes up (again) thinking we were on to something this time because she went from 8 pm Wednesday night to 11 am Thursday morning with no seizure activity.

11 am shows up and even then Emily only has a couple of small episodes, both under 4 minutes a piece, and we still have high hopes. But then 2 pm shows up and our hopes are crushed (again).

Emily had an episode at 2 pm that lasted a total of around 3 hours off and on. (Yeah I said 3 hours!) We gave her all the meds we could safely give her at home and when we reached our max limit we had to call an ambulance. At one point Emily fell asleep because of the high dosage of meds (klonopin) we gave her, but even in her sleep we could see she was having seizures!

Fast forward to around midnight in the hospital and Emily starts having another "episode". And yeah, this one lasted around the same amount of time as the one at 2 pm!!! Only this time Emily has been given even stronger doses of medicine (I.V. Ativan (twice), Diastat and Phenobarbital) and it still took so long to bring her seizures under control. She is out of having seizures at this moment (fingers crossed) but she is WIDE AWAKE. No one who has been given that much medicine should still be awake. You and I would be out for a week if given that much medicine but for some reason Emily has such a delayed response to medicine. It has everyone confused.

So here I sit once again in the hospital with my baby girl next to me, writing another blog post about the disappointing and devastating journey of Infantile Spasms. I hate this with a passion. I wish a cure would be found somewhere. I wish what works for some kids worked for Emily. I wish she could live the same life as other kids her age and I wish like heck we could be done with this, and soon.

Monday, March 15, 2010

We are back in the hospital for what will make a full week today. Emily started having her "big seizures" at home last Monday and we ended up back in the ER which then led to a week long stay. Which also then led into surgery (G-tube placement), a Lumbar Puncture (Spinal Tap), another MRI, Starting the Ketogenic diet and another EEG.

Isn't that enough already??

But to make matters worse we got the results of her MRI and it's not good. Emily's brain is in atrophy. Which means that it's shrinking. Or another possibility is that her skull is growing and her brain is not. The neurologist seems to think it's not that her brain isn't keeping up with her skull but that it's in atrophy.

Look up what brain atrophy means and you can guess how I'm feeling right now.

But that doesn't mean we are giving up or losing faith.

We still have a few little pieces of hope to hang on to. Our neurologist wants us to get a second opinion at the Cleveland Clinic but first we have to wait about a month to see if the ketogenic diet helps any so that we don't waste our time when we go to Cleveland.

So what we can still hope for is...

1.) That the ketogenic diet works and starts working fast.

and

2.) That our visit in Cleveland results in more answers and possible treatments.

As long as we still have either one of those two possibilities to hang on to we are going to hang on to them for dear life!

This week has been the most overwhelming period for us since we started this journey back in December. It's hard to sit back and watch this happen to your princess and just feel so helpless. It's been a nightmare as you can imagine but somehow, someway God has given us the strength to make it "just one more day".

I was reading my Bible last night when I just "happened" to read these words in Isaiah.

Isaiah 63:9 (NIV)

In all their distresshe too was distressed,and the angel of his presence saved them.In his love and mercy he redeemed them;he lifted them up and carried themall the days of old.

When I read that I felt like the Lord was telling me that we aren't alone in this. That although it feels like our backs are up against the wall and we are at the end of our ropes we can take comfort in knowing that He is right there with us.

That no matter how ugly this journey might get or how many nightmares we encounter along the way He too feels distressed when we feel that way. He feels our pain and he agonizes with us!

And that is truly the only way you can have any sort of peace about you in a mess like this. To walk with the Prince of Peace, Christ Jesus.

It's been a very rough week and I'm scared out of my mind for my little princess but I know there is one who loves her more than I could ever love her (as hard as that is to imagine). And all I can do is trust and have faith in Him.

Sunday, March 14, 2010

My little princess was diagnosed with I.S. back in December of 2009. Needless to say, it was the most devastating month in my life. One of the most wonderful months of the year was turned upside down and became the most frustrating.

Emily was born on June 5th 2009. She was a healthy baby born without any trauma during birth. She came into the world via C-section and was delivered at 38 weeks. My wife, Erica, has a blood clotting disorder that required her to take blood thinning shots (Arixtra) during her pregnancy. The induction was scheduled so that the Arixtra could be stopped in time to prevent severe blood loss to Erica during birth. The longer we waited the higher the risk because if Emily decided to come before planned then Erica would have been in great danger during the birth.

So Emily finally arrives safely and we become the proud parents of a 5lb, 9oz, 19in long baby girl. She was small but she was healthy and that's all that mattered. I will never forget how proud I was to walk down the hall in that hospital and show the world my little princess! I was floating on air!!

Fast forward a few months through some normal newborn activities (other than her constant fussiness, the doctors thought she had Colic) and we arrive to December. Emily started doing these things that looked like hiccups. We paid no attention to it until one day Emily was sound asleep on the couch next to Erica and woke up doing it. She was brought out of a dead sleep so my wife thought we should take Emily to the doctor to have it checked out.

Luckily for us, the doctor seen Emily while she was doing her little "hiccups". His tone changed immediately and he turned off the lights and started shining his penlight in her eyes. Our hearts dropped because he seemed so concerned and then he uttered the words we will never forget, "She's having a seizure. Call 911!" For the pediatrician to tell his nurse to call 911 was definitely cause for concern and we were still clueless. We were rushed by ambulance to the nearest Children's Hospital in Louisville, Kentucky and that began our journey.

After many consults, tests, EEG's and MRI's we finally learned that Emily had a rare and devastating seizure disorder called Infantile Spasms. It didn't register with us at first because we'd never heard of such a thing but after speaking with the neurologist and doing our own research we soon realized just what it was our little Princess was going through.

Hi, my name is Joe and I'm the father of a beautiful Princess who has Infantile Spasms. SHE has It, It does not HAVE HER!!!